Beyond Batten Disease Foundation

Join us in our mission to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

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  • About Us

    • About the Foundation

      • Mission and History
      • Board of Directors
      • Staff
      • Youth Leadership Committee
      • Founders Circle
      • Internships and Service Hours

    • Funds

      • Bind Up Batten
      • Charles ‘Wheeler’ Stecker Research Fund
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Will Herndon Fund

    • BBDF’s Role and Impact

      • Accomplishment Timeline
      • The Be Project
      • BE a Hero
      • BBDF 101 Treatment

    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Understanding Batten

    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • Living with Batten

    • Family Stories

      • Family Videos
      • A Mother’s Story
      • Share your Story
      • Batten Map

    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Research

    • What We Know

      • State of the Science
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
      • Research Activities
      • BBDF 101

    • For Researchers

      • About Funding
      • Forms and Instructions
      • Resources

    • Contact Dr. Danielle Kerkovich

      Danielle M. Kerkovich, Ph.D.
      Phone: 202-812-6462
      Email Danielle

  • Get Involved

    • OVERVIEW

      • Donate
      • Create a Fundraising Page
      • Create a Fund
      • Volunteer

    • UPCOMING EVENTS

      • Wild For Hope
  • BBDF Blog

Volunteer

Beyond Batten Disease Foundation  ⁄  You Can Get Involved in Several Ways  ⁄  Volunteer

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Contact Us

  • 512.275.2600
  • info@beyondbatten.org
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

What’s New?

  • BBDF Announces Agreement with Actelion Pharmaceuticals Ltd to Provide Drug Product for BBDF-101 March 2, 2021
  • BBDF and Theranexus collaborate to publish journal February 5, 2021
  • BBDF-101 Announcement August 28, 2020

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